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Ethan Perlstein left academia to become an independent researcher, investigating rare diseases. In this guest post, he explains how he arrived at this decision, and what his plans are.

Recently I declared scientific independence and a newfound focus on rare/orphan diseases…on my blog. This decision was not planned far in advance. It’s more adaptation to a stressful basic research climate that’s disproportionately affecting aspiring, apprenticing and early-career life scientists. Several months into my experiment as an independent scientist focused on rare diseases, here’s what I’ve learned.

Before going rogue, I spent a decade in academia as a trainee working at the intersection of genetics, cell biology and pharmacology. I was fortunate that my postdoctoral fellowship afforded me a budget, lab space and creative autonomy. And before that I was able to carve out my own niche as a graduate student in a big lab. But, like many of my fellow contestants in the Tenure Games, the odds are ever in our disfavor. Trouble is I had my own unconventional ideas about drug discovery, so I didn’t want to settle for Pharma. And I certainly couldn’t countenance abandoning science altogether.

When I first noticed the writing on the wall in 2011 I joined Twitter, hungry for connection, collaboration and counsel. Over time, the online scientific communities I found opened my eyes to exciting Open Science alternatives to the crumbling status quo, including crowdfunding, post-publication review, and real-time research blogging.

Earlier this year, I started networking with rare/orphan disease advocates. There are several reasons why I decided to focus on rare diseases. First, someone in my family was diagnosed with a rare disease, and it got me thinking about the state of rare disease research. Second, I was captivated by the success of a drug called Kalydeco, which effectively cures a subset of people with the rare disease called cystic fibrosis. Finally, I attended the 2013 Rare Disease Day summit in Bethesda MD, where I met an inspiring group of rare disease parents, in particular moms , who made me realize that each rare disease is not only a basic science puzzle, but also a living and breathing person, often a child.

In the near term, I’m focusing my approach on a group of ~50 related rare diseases called lysosomal storage disorders, specifically Niemann-Pick Type C. I’ve also been focused on locating new digs. After some sleuthing and cold calling, I was put in touch with the folks at the Molecular Sciences Institute  in Berkeley. I’ve signed a two-month sublet, which entitles me to a bench and turnkey access to the lab. I’ll be blogging about experiments in real time on my lab website. And those experiments that I can’t do myself will be outsourced through a site like Science Exchange.

Farther out, I’d like to rally scientists and advocates around a rare disease Moon Shot. Ping me on Twitter  or by email if I’ve piqued your interest.